Dar es Salaam — The President of Zanzibar, Dr Hussein Mwinyi, has ordered state institutions to incorporate rare disease treatment in the health policy so that children facing such health issues can receive specialised care, particularly oxygen. Dr Mwinyi made the statement on Tuesday evening when he spoke to delegates...
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The ground wobbles a little when your newborn is diagnosed with a rare disease. It threatens to swallow you whole when you learn a NICU attending has to distribute two stapled pages to each of his staff summarizing your daughter’s condition. They had never before treated a child with Hilde’s diagnosis, let alone...
North Carolina’s health care system has been unkind to Kay Swan and her family. Her husband suffers from kidney disease and her son was diagnosed with Wolfram syndrome, a rare genetic disorder that can cause diabetes, loss of vision and deafness. When Swan lost her job of 18 years, her...
MINNEAPOLIS — Every day, thousands of people with leukemia and other life-threatening diseases search the Be The Match Registry for a bone marrow match. To highlight the enormous need for more bone marrow donors, Be The Match(SM), the new name for the National Marrow Donor Program(R) Registry, kicks off its...
National Organization for Rare Disorders (NORD®) Founder and past President Abbey S. Meyers, PhD, former U.S. Rep. Jaime Herrera Beutler of Washington State, New York Yankees centerfielder Bernie Williams, and pioneer clinical geneticist, Dr. Ada Hamosh, headline a group of rare disease champions who will be honored for their outstanding...
LINCOLN, Neb. (KOLN) -The annual Nebraska Football Road Race will return to an in-person format this summer with the family-friendly event set for Father’s Day on Sunday, June 20. The Nebraska Football Road Race presented by the Lincoln Track Club features the one-mile Fun Run set to begin at 8...
CORNWALL — Ryan Neiswender is as bright, perceptive and articulate as any 15-year-old could be. But for someone so intellectually aware, the soon-to-be Cedar Crest High School freshman appears to be profoundly oblivious to the fact that he’s been dealt a bad hand in life. That’s probably because when Neiswender...
SAN DIEGO – Neurocrine Biosciences, Inc. (Nasdaq: NBIX) today announced its support of Mental Health Month and commitment to raising awareness of and supporting people living with tardive dyskinesia (TD). Some people living with a mental health condition may also experience TD, an involuntary movement disorder that may develop after...
Jordan Janz used to take 40 to 60 pills every day to treat a rare genetic disease. But a side effect of the medicine made the 22-year-old smell bad. Janz is now taking an experimental gene treatment. He thought the treatment might be worth it when he went to work and his...
The news that changed the course of Ollie’s life came from a doctor when he was just 9 days old. It had been a blurry summer of protests and pandemic, and Ollie’s mother, Elaine Hurst, had looked forward to the newborn “bubble.” Their family also was regrouping after relocating from...